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12:37pm July 21, 2013

Why I don’t like reading blogs by medical professionals very often.

Oh FFS medical professionals, get it right. This is why I don’t read your fucking blogs.

Yes, I understand that for people who are truly dying and would probably rather be dying, the ICU is basically a torture chamber.

But.

You don’t help disabled people by portraying the exact same technology that keeps us alive as grotesque and horrible stuff that would be better off never having been invented. And for people who would never be alive without multiple hospital and ICU visits, you don’t instill us with any confidence at all when you advise people it would be best to never be hospitalized, or never admitted to the ICU. Because most disabled people are as glad to be alive as any nondisabled person. And we are often the ones who have to rely on medical technology to stay alive, and on the medical system to save our lives. We don’t have the option of staying out of hospitals until the moment we are dying. Many of us wouldn’t live out the year, hell sometimes even the month or the week, without multiple hospital visits, admissions, or ICU stays.

And it also doesn’t help when you try to scare people out of treatment, by telling them they might, if they survive and stay conscious, end up like us. Unable to speak. On feeding tubes. In wheelchairs. On respirators. Cognitively impaired. Bedbound. In constant pain. Relying on others for our care.

And then when we tell our stories. Of medical discrimination. Of being presumed to have no thoughts, or no quality of life. Of having people just like you try to talk us out of life saving treatments. Having people like you scoff when our living wills say we want more than you would want for yourselves.

You have the gall to call us uneducated, tell us we must be right wing fundamentalists, that we just don’t know how things work when clearly dying people are kept alive by artificial means even when their bodies are shutting down around them. Or that we must have entirely superstitious reasons for wanting what we want.

Let me spell it out for you:

There are circumstances where I would not mind stopping all medical care and dying. I’m prevented from spelling that out in my living will, by the very people who most advocate for people to be able to die.

Because those people use the everyday medical equipment and assistive technology that I need to survive, and may need more of in the future, as a scare tactic. They use my health problems and disabilities as a scare tactic too. They talk about having truly informed consent, but they deliberately scare people about the very things I need to survive. Which is coercion, not choice. 

Meanwhile, as a disabled person, my contact with the medical system is not benign. Medical professionals very all the ableism of the society they come from, plus the extra bonus ableism that comes from viewing themselves as the experts on our lives. They always rate our quality of life far lower than we ourselves do. And that’s a direct consequence of the things their training and field experience teaches them – wrongly – about our lives. As well as the ways their own fears become “objective medical knowledge” rather than a combination of unfounded fear and arrogance.

So when I go to the doctor. They are less likely to take me seriously. More likely to automatically give out a bleak prognosis than they would be to a nondisabled person with the same problem. May outright refuse to treat me because they either don’t see me as worth the effort, or don’t see my life as worth living or saving. And in some instances, try to persuade me to forgo treatment and die.

I can’t decline a feeding tube, or I would be dead (or in the process of dying) already. I can’t decline a respirator, because my muscles are already so weak I need oxygen and sometimes a bipap. If I got sicker, I might need a respirator to survive. I can’t decline all these treatments than living wills ask you about, because I need them in the here and now. I can’t even specify that I only wouldn’t want them if I were dying and nothing could be done, because I and other disabled people frequently get told “nothing can be done” when people really mean “we don’t find you worth treating”. 

And these are not hypothetical situations cooked up by a right wing fundamentalist agenda to scare people out of making their own choices. They happen all over the place, to all kinds of disabled and chronically ill people, right here and right now. They have happened to me and to my friends and acquaintances. For many disabled people, this is the rule, not the exception.

I shared a staff person with a man with a severe intellectual disability. A doctor took one look at him once and said he wouldn’t live out the night and there was no point in treating him. He had an infection. The same kind of infection I’ve gotten. The only reason he was given a poor prognosis is he was considered not worth saving. Our mutual staff screamed her head of at the ER doc and suddenly he was given antibiotics and made a full recovery. This was ten years ago, to my knowledge he is still alive.

Parents of children with developmental disabilities of all kinds, are pressured into signing DNR orders. Pressured not to treat pneumonia. Pressured to simply let them die in situations where nondisabled people would be treated.

I was recently pressured to go home and die rather than get a feeding tube that would kill two birds with one stone – reduce aspiration pneumonia and allow me to eat. (Yes I know some feeding tubes increase aspiration risk. Mine doesn’t because my aspiration is caused by gastroparesis. Drain my stomach through a g tube, do all food and meds by j tube, and the problem largely goes away.  But I was under relentless pressure to die, morning and night, while also weak from pneumonia. People witnessed this, I didn’t just imagine it.

This is routine.

The reason I don’t get to make my real choices about my death is because if I gave them even half a reason to allow me to die, I’d be dead already. People who use disability related scare tactics only make it harder for disabled people to make these choices. And when we choose to live, to “do everything”, people think we just don’t know what that means.

Most of us have no illusions. We simply don’t have choices. I would submit that people who think disabled people should just refuse such and such care if we don’t want it, are the ones who don’t know what that means. They don’t know, or sometimes don’t care, what happens to disabled people who give medical professionals any way that we could die.

Some of us luck out, sure. They die just when and how they want to. But others of us die before our time, because people interpret our living will to allow us to die earlier than we really want to.

Also, even when we want to live, there is pressure. There is scorn and derision, rolled eyes, snarky comments about our presumed religious motivations, pressure to change or kinds, scare tactics, and even sometimes deception. Because medical professionals let their own irrational fears and prejudices guide their treatment of us, and then have the nerve to tell us we are the irrational ones, to fear what has already happened to us in flesh and blood real life.

So many of us make the choice I’ve made. We “want everything done” not because we don’t know what that means. But because we have frequent medical emergencies where the “everything” might come up. And because during those emergencies all it takes is getting the wrong doctor, who doesn’t want to treat us for any of a whole array of reasons, who can find ways of making our situation sound more dire and untreatable than it is. So we risk a prolonged and torturous death in the future, because in the here and now, we need every tool at our disposal to allow us to survive another year, another ten or twenty or fifty years, before that death happens. Rather than tomorrow when we get pneumonia that someone will find an excuse not to treat, or a month from now when we need a respirator.

And those of us making those decisions are not all mildly disabled, nor are we afraid of death. I live my whole life from bed and will welcome death… But only when it’s my time. And too many people, too many times, have tried to decide for me that my time is now. The first one was almost twenty years ago. I happen to have enjoyed the last twenty years, the last ten years, every bit of time I’ve had since every time I’ve had to fight medical professionals for my life. Most medical professionals would assess my quality of life as very low, but actually as time goes on I’m only more and more happy with my life.

Yet my life is among the horror stories some medical people use to scare people into forgoing treatment.  “Imagine having to take all your food the rest of your life through a tube, is that really living?” Yes it is, and it’s good living too. Tons of people all over the world live on feeding tubes. If we wanted to die that bad, we’d be dead. “Imagine never going skiing again. Imagine never leaving your bed except in a wheelchair. Imagine not going on walks. Imagine having to rely in others for your every need." 

Except lots of disabled people don’t have to imagine. This is our life, our reality. Some of us embrace it. Some of us hate it. Some of us are in between. But those of us who would have chosen death rather than our current lives are rare. If we all wanted to die so bad, you’d see disabled people in droves, driving our wheelchairs into traffic, off cliffs, into lakes. The fact that we are still around is proof enough that most of us want to be. So give people the facts, but don’t use us to scare people, don’t act like "if you survive, you’ll end up in a wheelchair/on a feeding tube” is a good way to talk people into rejecting medical treatment.

You’re both making it harder for us to die how we want, and more important, to live.  And our concerns come from reality, our real lives, not propaganda or superstition.